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New with permanent ileostomy

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Posted 7/4/2018 10:32 PM (GMT 0)
Hi,

I had surgery 3.5 weeks ago. I have a permanent ileostomy. Unfortunately I’ve had a lot of complications. My surgeon had put his finger in my stoma and ripped 4 stitches. I’m having a nurse come to my home every 2nd day doing wound care. I’m really weak kinda frustrated. Unfortunately this was the 4 major surgery in 14 months. I had been fighting ulcerative colitis for just over 7 years and couldn’t go into remission no matter what was tried. My question is how long before you start feeling stronger? Also, I noticed some people wear their bags horizontally over vertically. Can anyone offer me advice on which is better?

Thanks,
Kela
Posted 7/5/2018 1:56 AM (GMT 0)
It was gradual recovery process for me very gradual to get feeling stronger , I kept noticing myself getting better and stronger each month an 6 plus months after surgery I felt better at 6 months then i did at 4 and better 9 months then i did at 6 it take time but you will get there , I nkow how it feels frustrating but it will come
Posted 7/5/2018 9:52 PM (GMT 0)
Hi! It takes time. I believe it took me a good 6 months before I got my full strength back. I had complications after surgery. The resident told me I could eat two days after surgery, and that just wasn't the case. I wound up throwing everything up and had to have the ng tube placed back in for a few days. Then, eight days post op, when the nurse was on her vital sound rounds, she couldn't get my BP. It had dropped to 70/40, temp was 105 and heartbeat 150. Looking back, I believe it was sepsis, but at the time they just dropped everything to try to help me survive. I didn't even feel sick! LOL! I just remember feeling very sleepy and they wouldn't let me sleep. So, that set me back a few more days. I was finally discharged 11 days post surgery. My surgeon left my anus, not sewn closed. Four years post surgery, the disease is inside that itty bitty part that was left. My surgeon has since retired, but, my new surgeon said to take out that anus would be MAJOR surgery. So, he just does annual biopsies. So far, so good. I am not in any discomfort. It's been 8 yrs since my surgery. I have no regrets, I'm 72 yrs old and feel better now than I did 20 yrs ago. As far as the horizontal bags, I never heard of them. I use the Coloplast Sensura, one piece bags. Been using them ever since I had two Hollister bags burst on me, and that was the first year with my ileio.
Posted 7/5/2018 10:30 PM (GMT 0)
3.5 weeks is so soon after surgery. It takes a long time to adjust. I had no complications and I was still feeling quite weak a few weeks following surgery. You need to be realistic about the amount of time it will take to recover. I don't think I was allowed to lift more than 10 pounds for about 6 weeks. You need to give your body time to heal.

Were the other 3 surgeries GI related?
Were you interested in a j-pouch?
Other than the general fatigue, are you having any pain?
Are you getting used to working with the appliance yourself?

I think the only time they ever put my bag horizontal was in the hospital when I was stuck in bed. it was easier for them to empty it that way. Once I was doing it myself, I always put it with the part you drain facing down. I would think that's least likely to leak up by the wafer, and the easiest to drain into the toilet.

You will feel better when you get some strength back and gain confidence working with the ostomy supplies. Being reliant on the nurse made me feel down in the dumps a bit. I had the nurse for a couple weeks. She came every other day to help me. I was thankful she helped, but ultimately, learning, finding supplies, and trying options on my own made me feel so much more capable and confident. Give yourself time. You will feel better, stronger, be free of UC, free of drugs...
Posted 7/7/2018 9:32 PM (GMT 0)
I agree with what everyone has been telling you. I'm also 3.5 out of my last surgery and every time I try to do too much, I pay for it in a big way. I had a "loop" ileostomy in 2017, now they removed the colon and revised it to an "end" ileostomy. It's hard to be patient but I do realize it takes time for our body to heal.

With regard to wearing the pouch vertical/horizontal... I use the Coloplast two-piece and actually put it on at an angle so it is more comfortable since I'm so short waisted (it's still easy to empty into the toilet). I prefer the two piece for a couple reasons: I can change the bag without changing the entire appliance - if I'm going somewhere, it just makes me feel cleaner to know it's fresh. Also I try to wear the belt so have the flange straight and only turn the pouch... know what I mean?

Good luck to you, hang in there and take the time you need to heal --> I'm with ya, and I'll even try to practice what I preach smile
Posted 8/14/2018 8:16 PM (GMT 0)
MsKela - w/regards to your surgeon, WTH?! He/she should know better than to stick their finger in your stoma! Good grief. I had a nurse run their finger around my stoma the day after surgery - it hurt like hell and I yelled at them not to do that again.

As far as recover - 3.5 weeks is nothing. Take it slowly, day-by-day and hour-by-hour. Get lots of sleep. And, check on yourself in 3 months/6 months/9 months.

As far as the bag - try out each way. Worn vertically or horizontally, each way has it's pluses and minuses. Also, I'd try this at the house before you ever go out for an extended period. You need to look ahead to challenges in the wonderful world of public restrooms - LOL!
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